It was July 31, 2021 and the Tuder family was celebrating a wedding. The groom, Nathan, was particularly dashing, sporting a white tuxedo and top hat offset by a stunning purple sash, and the women were dressed like princesses. It was important to Nathan that his mother, Kelly, accompany him down the aisle, and together they made a beautiful pair. Walking slowly and deliberately, they kept a wheelchair nearby, determined not to use it but keeping it close behind just in case.
Kelly’s eyes shone with pride and their faces beamed with joy. She wasn’t sure she would get to this moment with her son, and now that it was here she was determined to soak everything in. They made it down the aisle unassisted, and she sat close by as he turned to wait for the rest of the processional. Once his beautiful bride joined him, they turned to hear the pastor’s inspiring words about love and living life to the fullest.
Those words did indeed bring hope and peace to the family. They knew sadder days were ahead but were determined today would not be one of them. Today, nothing would stop Nathan from enjoying his wedding day. And at just 11 years old, that’s exactly what he did.
Enjoying pizza and cake while he danced the afternoon away, Nathan boogied to the electric slide with his grandpa “Pa” and even managed to sneak A KISS ON THE LIPS with his bride RaeLynn despite the agreement with his parents to stick to a kiss on the cheek during the ceremony.
How do you explain gravitational force?
“Nathan was like gravity. He literally just pulled everyone and everything in around him without even trying,” his dad Scott explained.
That gravitational pull included three employees at a Whataburger in Texas who became fast friends with Nathan. Nathan’s charm meant he was not allowed to pay for his beloved hashbrowns, despite nearly 20 visits over the course of a year.
Everywhere he turned, Nathan brought joy to those around him, treating all he met like they were old friends. There was no such thing as a stranger.
The diagnosis and the fight
Scott and Kelly will never forget the day their lives changed forever. On September 5, 2016, when the rest of the country was enjoying a long Labor Day weekend, Nathan was diagnosed with Stage 4 High Risk Neuroblastoma. He would spend the next five years – nearly half his life – fighting this beast of a disease. Nathan bravely underwent six intense rounds of chemo, four tumor resections, a stem cell transplant, more than 50 radiation treatments, and too many physician visits to count.
When his cancer returned in March 2021, his fifth relapse, his parents knew it was time to stop. Their new mission was to allow Nathan to live his life to the fullest, and their doctor referred them to Kansas City Hospice & Palliative Care’s Carousel Pediatric Hospice team.
Although things moved quickly once they made the decision, they had been carefully considering this next step for quite some time and as a family, they were at peace. “It really meant a lot to us to have the support from Carousel. To have somebody I could call at any time, no matter how big or small the question,” Kelly said.
For the next six months, the Tuders and the KCH Carousel team worked side by side to ensure Nathan would get the care he needed.
“I absolutely fell in love with our nurse the first time she came out,” Kelly remarked. “And she pretty much instantly fell in love with Nathan.” Their nurse, Megan, recounted, “Every day I was there we would sit and talk through things and we’d have time with Nathan. Some days we’d try to keep it as minimal as possible because he wanted to play. A lot of it was making sure we had a plan.”
The family’s, and therefore the team’s, goal was to let Nathan be a kid as much as possible. The Carousel team was there to support him – whether it be pain management or a friendly conversation – and ensure mom and dad had the support they needed as well. Not all of those conversations were easy, but they helped bring peace and understanding to a family who had spent years fighting a terrifying disease. “It felt to us they weren’t just ‘somebody else in our house,’ they were family,” Kelly shared, remembering the team fondly.
It’s not every day you have a wedding/prom for an 11 year old.
“Nathan said from pretty much the beginning that if anything happened he wanted to pass away at home, and I was determined to make that happen,” Mom said. “He didn’t get a lot of choice in a lot of things for five years so I wanted to make sure he got that.” Not only did Kelly make sure he would be able to die peacefully at home surrounded by loved ones, the whole family was determined to ensure he could experience as many life milestones as he wanted – like prom, graduation and getting married. Together they made a list, and then started checking boxes.
Of them all, he was most excited about the wedding, but “it wasn’t just the wedding. He got to experience a trip to Florida and Kansas City Hospice arranged potential care with a hospice down there in case anything happened. So he got to go to a theme park, and he loved Spiderman and Marvel characters. He got to embrace that time when he was feeling good,” said Nurse Megan.
Another milestone was met when Nathan graduated from Staley High School. The school provided him with a diploma, cap and gown, and hosted a small ceremony for him and his family. “I don’t think we could have done the things for Nathan that we did without Carousel,” said Mom. “Certainly not at as grand of a scale as we were able to pull them off,” chimed in Dad.
The ultimate rally and a final goodbye
On a Saturday in August, it was clear Nathan was nearing the end of his long journey. His breathing slowed to just four breaths per minute and it appeared he was slipping away when suddenly, his numbers started to climb! He sat up and asked, “What’s going on?” That evening, he got out of bed, hugged his brothers, walked through the house to the driveway and came back in with some people to show off his transformer toys.
The next morning, Kelly was sitting with Nathan. He could sense something was wrong and asked her about it, to which she replied, “Well buddy, you almost died last night.” Then she asked, “Is there anything you’d like to do?” He replied, “I’d like to go to the store and spend my money.” Kelly jumped out of Nathan’s bed and said, “Let’s go.” So, the whole entourage loaded up and went with him to the store.
From that point on, Nurse Megan spent more time offering support and help to the family. Kelly notes, “It was nice to have the reassurance that we are doing the right things. When you’re in that position, it’s totally different. All the rules are out the window because comfort comes first.”
Looking back, his mom recounted, “That last week with Nathan just showed how much of a fighter he really was. He was that determined from Day 1 of his diagnosis.” That fighting spirit and will to live his life as fully as possible stayed with him through his final moments.
Four days after the shopping trip, Nathan was once again slipping away. At 2 a.m. he woke up requesting water, something he had not wanted for days, giving his family a final opportunity to talk to him, express their love, and receive one of his famous hugs. As his dad Scott notes “If you ask anyone who met him, his hugs are the best.”
Nathan died peacefully, surrounded by family and friends on August 11, 2021 at his home, just as he had hoped.
Your gift today helps children and families
The Tuder family has made an indelible impression on the Carousel team, and it’s clear the Tuder family feels just as grateful. “If I had to pick a term for Carousel, I would say they were our guardian angels for that six months,” Kelly says. “I don’t know how I would have made it through last year without Carousel.”
What you may not realize, is what an impact YOU make to this story. Your previous gifts have ensured care is accessible to all who need it, regardless of their resources, and that we are able to provide opportunities for families which help them find peace, hope, and even joy at the end of their lives and the lives of their loved ones.
With your support, children and adults of all ages receive extraordinary care while their families find peace during an unimaginably difficult time.
Would you please consider making a gift now which will go right to work helping children and families served by Kansas City Hospice? Your gift to this campaign will be matched dollar for dollar up to $25,000 by a generous local donor. Even better, would you consider becoming a Sustaining Angel by committing to a regular monthly gift in an amount of your choice? The generosity of Kansas City Hospice Sustaining Angels allows us to provide care all year long to families in need.
Whether you choose to make a one-time gift today or sign up to become a Sustaining Angel, I thank you for trusting us to carry out your vision of ensuring each person in our community is valued from life through death and each family is supported in their grief. We depend on you, and so do they.
With a grateful heart,
David S. Wiley
President & CEO
P.S. Thanks to your generosity, the Carousel Pediatric Hospice team is able to provide everything needed to guide children and their families through the crisis of illness in a way that minimizes pain, fear and uncertainty.
